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7/31/2007

Deep Brain Stimulation


Deep Brain Stimulation (DBS) has been tapped upon as a surgical procedure for Tourette syndrome. This procedure is considered to be potentially dangerous and very expensive. Because of those reasons, DBS will not likely to be considered as an option for treatment for the majority of people who have Tourettes. According to the Tourette Syndrome Association in the US, DBS should be considered only as an experimental treatment modality for only a small minority of people or those that only have extreme cases of TS. There were actually two programs which aired last 2006 (Discovery Health Cable Channel and Miracle Workers on ABC) that featured DBS for two patients who have extreme cases of Tourette syndrome. One is a 50 year old male and a 19 year old female who both underwent Deep Brain Stimulation.

What is Deep Brain Stimulation? DBS is a surgical procedure which involves the implantation of a medical device called a brain pacemaker which primary function is to send impulses to specific parts of the brain. As a procedure it was approved for the treatment of essential tremors by the Food and Drug Administration (FDA) in 1997, for parkinsons in 2002 and dystonia in 2003 taking note that it hasn't been approved for Tourette syndrome.

"The deep brain stimulation system consists of three components: the implanted pulse generator (IPG), the lead, and the extension. The IPG is a battery powered neurostimulator encased in a titanium housing, which sends electrical pulses to the brain to interfere with neural activity at the target site. The lead is a coiled wire insulated in polyurethane with four platinum iridium electrodes and is placed in one of three areas of the brain. The lead is connected to the IPG by the extension, an insulated wire that runs from the head, down the side of the neck, behind the ear to the IPG, which is placed subcutaneously below the clavicle or in some cases, the abdomen.[4] The IPG can be calibrated by a neurologist, nurse or trained technician to optimize symptom suppression and control side effects.[citation needed] DBS leads are placed in the brain according to the type of symptoms to be addressed. For essential tremor and Parkinsonian tremors, the lead is placed in the thalamus. For dystonia and symptoms associated with Parkinson's disease (rigidity, bradykinesia/akinesia and tremor), the lead may be placed in either the globus pallidus or subthalamic nucleus.[5] All three components are surgically implanted inside the body. The right side of the brain is stimulated to address symptoms on the left side of the body and vice versa." (Wikipedia, July, 2007)

The actual procedure of DBS involves pre-operative preparations such us identifying the neurosurgical target with the use of an MRI (magnetic resonance imaging) or CT Scan (computed tomography scan). During operation, the patient is placed on a local anesthesia and the patient remains awake all through out the procedure. A craniotomy is then performed and a DBS lead is placed in the target area unilaterally or bilaterally depending on the patient's symptoms. Then the IPG and the extension are connected to the lead. These fixtures all work to promote effectiveness of the surgery performed. It is programmed to further maximized its effectiveness. The battery life usually lasts up to 3-5 years and needs to be replaced.

The DBS procedures already done documented successful outcomes for TS patients but up to this point this specific procedure is still on experimental status. Since 2006, there has only been 5 published reports on DBS, all of them documened significant reduction in tics and in symptoms of obsessive- compulsiveness.
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Pools of Water

This is a letter from a Proud Mother of a kid with Tourette Syndrome. I would like to share this to everybody for inspiration hoping that this letter would serve as medium to overcome difficulties of dealing with TS.


This story reflects the heartache and love than can come from parenting a Tourette child. The story of Keith, a young ballplayers with big blue eyes that must concentrate harder than ever before to "keep them open" when throwing a pitch, this wonderful mother shares with us what it felt like to learn her child had Tourette's from watching a network talk show and how she and her husband have learned that although they cannot "fix" their son, there is also nothing for them or him to be ashamed of either.

How wonderful for all the information on Tourette Syndrome. A few years ago my middle boy was diagnosed with Tourette's. Around the age of eight my son began blinking his eyes. Those big sky blue eyes soon became squinted almost all the time. I missed seeing the color that look like pools of water. Soon, other parents began to ask me if Keith had allergies. At first the doctor believed that Keith had developed nervous tics. Child hood tics that would disappear in a short while. Instead Keith started grunting , sniffing and, scrunching up his face. This time I took him to the doctor to have allergy tests done. The test came back ..... no allergies. My husband and I were instructed to ignore the tics. The more we brought it to Keith's attention the more he would tic. This was the doctors thoughts. As these symptoms became more noticeable my husband developed other thoughts. He believed that we could demand Keith to stop. He believed that this was just a bad habit that we allowed Keith to develop. This made for trying moments of the wills. I tried to keep my husband from nagging our boy and my husband along with his father believed that it needed to be stopped. One day on a "network talk show"they had children with severe symptoms of Tourette. My heart went out to these children. Then they talked to a boy who had more mild symptoms. My mouth fell open and my heart broke. This boy was grunting and blinking and scrunching up his face exactly like my son does. I went right to the phone and called our doctored. I told him about the show and my thoughts that Keith's tics may be Tourette. His words pierced my heart ,two simple words,"I agree. I'm going to get him an appointment with a specialist." It was a long wait until that appointment. I knew nothing about Tourette's other then what I had seen on television. I thought about the more severe tics and worried. Do these tics continually get worse and worse until they can no longer play sports. As I looked out at him on the pitcher mound blinking and throwing the ball. Then later grunting and hitting yet another home run I had to stop and face what was in my heart. Maybe next year he won't be out there. How could I ever tell him that.

This all came from no education on the subject and from talk shows putting the most dramatic stories out to the public with very little explanation. He was diagnosed with Tourette's and it hasn't slowed him down one bit. He is still pitching for his team and hitting home runs and grand slams. While pitching his tics increase but he has taught himself a little pattern so his eyes stay open while he throws. His team was undefeated for the past two years and won all championships. His soccer team was also undefeated and won their championship. He also plays great in basketball with only one loss for the season. With this and trick biking, rollerblading and snow boarding he has shown to me over and over that Tourette hasn't slowed him down in any way. He still loves and enjoys everything he always had.

It took his father a little bit to get use to the idea that he could not fix his son nor did we want him to. We look at Tourette as just a part of Keith ...like his blue eyes. Nothing to be ashamed of and never to be used as an excuse.
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www.tourette-syndrome.com


7/26/2007

World’s First Genetics Resource for Tourette Syndrome Research

One breakthrough in Tourette syndrome research has captured major publications and newsletters about TS from a wide variety of sources. Dr. Mathew State, a Yale University researcher has identified a specific gene defect in a small percentage of people with TS. The researcher claims that the research he did will be able to yield more researches that will identify exact causes and treatments for the disorder. He even mentioned that the research was far behind prior to the identification of the gene. For this kind of drawback, the Tourette Syndrome Cell and DNA Sharing Program was formed from the collaboration of the New Jersey Center for Tourette Syndrome and the Tourette Syndrome Association of New Jersey. Dr. Jay Tischfield, Chair of the Rutgers Department of Genetics and Director of National Institute of Mental Health Center for Collaborative Genetics Research on Mental Disorders, and Scientific Director of the Rutgers Cell and DNA Repository, will direct the collect and storage of the DNA samples, cell lines and other clinical data from people with Tourette syndrome including their families. These will be shared worldwide in order to identify the inherited factors that may be responsible for the development of the disorder and its co- occurring disorders. Dr. Tischfield found the program to be very useful for current researchers for Tourette and will also be useful for attracting new researchers.

“The TS DNA sharing would grow the knowledge-based economy of the state while improving the health and economic welfare if its citizens,” adds Dr. Tischfield. “These are exciting times. With the recent identification of a TS gene defect plus the first TS DNA bank, experts worldwide are poised for huge advances in the field of TS research--advances never before imaginable (TSANJ, 2006).

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Tourette Syndrome Association of New Jersey

7/25/2007

Conventional Approach to Tourette Syndrome Treatment

Tourette Syndrome has now been offered various types of treatment options. The most conventional one is pharmacotherapy or the use of medication as treatment. The medications are used to target specific symptoms of Tourette syndrome and its co-occuring disorders. There are a lot of new medications coming out that proved to be effective in treating medications, there are also cases where 2 or more medications are being taken concurrently. This kind of therapy often makes drugs more effective. But we all need to also consider that these drugs are effective but can also exaserbate certain symptoms of Tourette syndrome.

MEDICATIONS TO REDUCE TICS
Neuroleptics (tranquilisers): They counteract dopamine over-activity by blocking dopamine receptors.

Clonidine (Dixarit, Catapress)
Haloperidol (Haldol, Dozic, Serenace)
Pimozide (Orap)
Risperidone (Risperdal)
Mellaril
Navane
Fluphenazine (Prolixin)
Sulpiride (Dolmatil, Sulparex, Sulpitil)
Clonazepam (Rivotril)

Side effects: Patients need to be monitored carefully, there is a risk that they may develop an involuntary movement disorder called tardive dyskinesia. Other side effects include drooling, contraction of the facial and neck muscles, slow movement (bradykinesia), restlessness, tremors, fatigue, depression, anxiety, weight gain, irritability, dizziness, headaches, and insomnia. • Botulinum toxin (BTX)Tiny amounts of this chemical poison, which comes from the bacterium Clostridium Botulinum, were found to temporarily paralyse muscles and nerves. BTX has therefore been used as a treatment option for cerebral palsy and dystonia. In Tourette, it is injected into the muscles involved in tics.

MEDICATIONS TO REDUCE OBSESSIVE COMPULSIVE TENDENCIES
Antidepressants: These drugs increase the concentration of serotonin within the central nervous system and enhance serotonin's neurotransmission activities.

Clomipramine (Anafranil)
Fluoxetine (Prozac)
Sertraline (Zoloft)
Fluvoxamine (Luvox)
Paroxetine (Seroxat)
Effexor
Lithobid
Norpramin)
Paxil
Tofranil
Wellbutrin

Side effects: Drowsiness, blurred vision and nausea.

MEDICATIONS TO REDUCE ATTENTION DEFICIT HYPERACTIVITY DISORDER TENDENCIES
Stimulants

Methylphenidate (Ritalin) - See our fact sheet on Ritalin
Pemoline (Cylert)
Dextroamphetamine (Dexedrine)

Side effects: They may increase tics, cause tremors and reduce appetite.
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Henry Spink Foundation

7/19/2007

What Exactly is Tourette Syndrome

SYMPTOMS:
Understanding more of Tourette syndrome may lead you to notice some of its most common symptoms firsthand, especially the ones we can observe outright. Many resources have presented quite a bit of information about the symptoms of Tourette syndrome. But one needs to understand that the symptoms of the disorder may be exhibited in a manner ranging from mild to severe. And according to the most recent description of Tourette syndrome, which is a neurological disorder characterized by motor and vocal tics, the symptoms of Tourette are categorized according to this description--- motor and vocal tics respectively. Each category of tics is presented furthermore into simple and complex.


It has been mentioned in this paper early on that tics are sudden, repetitive movements. It is important to understand that these tics are not manifested by the individual purposely. The symptoms are involuntary movements and are preceded by a certain kind of sensation that goes away once the symptoms are executed. Every individual do not experience the same kind of relief most of the time. For other people with the disorder, performing the movement provides enough relief. But others find doing the movement faster and in repetition that may lead to a feeling of greater ease. In some cases though, these urges may only provide relief when pain is already felt on the involved muscle or muscle group. Depending on the age of the individual, some tics can be suppressed in a given time. For children diagnosed with the disorder, oftentimes they are unable to recognize the occurrence of tics hence they are unable to suppress them. Dr. Samuel Zinner (2004) even mentioned in his publication that the suppression is even worse than the tic itself because this can cause a rebound phenomenon and I quote “Tic suppression usually results in a rebound phenomenon at a later—safer, as it were—time and place (such as when the child returns home from school) during which the severity of the urges that had been suppressed compels more frequent and intense tics.”


During times of excessive anxiety or stress, these tics may worsen with considerable varying degrees of intensity and frequency but disappears when the individual is under concentration and are absent during sleep. The most frequent, severe or intensified symptoms of the disorder can be experienced before the mid- teen years and said to improve in most cases during late teens and early adulthood. According to the Tourette Syndrome Fact Sheet (2006), an estimated 10% of those affected have progressive and disabling symptoms that last into adulthood.


For more detailed enumeration of the symptoms, the table below presents the simple and complex symptoms for both the motor and vocal tics.



MOTOR AND VOCAL TICS



Simple Motor Tics: Facial grimacing, Shoulder shrugging, Head jerking, Eye blinking, Nose twitching, Limb jerking, Abdominal tensing, Wrist snapping, Jaw thrusting



Complex Motor Tics: Head shaking, Touching the Nose, Kicking, Touching other People, Echopraxia (copying of movements done by others), Smelling objects over and over, Stomping, Jumping, Copropraxia (obscene gestures), Various face and neck contortions, Jabbing, Self-injurious Behaviors



Simple Vocal Tics: Screaming, Sniffing, Grunting, Throat clearing, Barking, Coughing, Squeaking, Blowing, Sucking sounds, chirping, whistling, Snorting, Yelling, Laughing



Complex Vocal Tics: Palilalia (repetition of one’s own sounds, words or phrases), Echolalia (repetition of the words of others), Coprolalia (uttering of undesirable or obscene words or phrases and/or swearing), Stuttering and various changes in the pitch and volume of one’s own speech





It is imperative for your information that the listing above is not inclusive of all known motor and vocal tics. The symptoms listed are the ones oftentimes been recorded in most of the studies already done.




CO-MORBID DISORDERS:

Based on the early passages of this paper indicating that Tourette syndrome is a common denominator resulting from a combination of tics, attention deficit hyperactivity disorder, obsessive-compulsive disorder, and other behavioral problems (Jancovic, 2001), researches point out that there are other disorders associated with the one’s already mentioned that are occurring together with Tourette syndrome. According to the Medical Network (2006) in an article written by Maria Andres, researchers have found that from the American’s general population of individuals diagnosed with Tourette syndrome, many individuals, while having the disorder, also displayed symptoms associated with the other disorders mentioned above. And a number of percentage account to individuals with self- injurious behaviors.



CAUSES:

Researchers point out to common causes of Tourette syndrome. For one thing, they say that it is caused by an imbalance of the brain’s production of a very important neurotransmitter called dopamine which was already mentioned earlier in the chapter. Another reason pointed out to an abnormality in the functioning of certain brain structures responsible for the make up of Tourette syndrome which was also mentioned in the early passages. But the most researched cause of the disorder has been reported to be brought about by the whole paradigm of genetics. Genetics has said to play an important role in the disorder. The disorder is inherited in an autosomal dominant manner which means that an individual has a 50% chance of passing the gene to his or her children (NAMI, 2006). But this does not mean that everyone will show symptoms. It is believed that 70% of the females and 99% of the males with the gene responsible for Tourette syndrome will exhibit the symptoms. This also accounts for the reason why males are more affected than females. And it is presented that approximately one in ten children who inherited the gene from their parent will exhibit symptoms severe enough to require medical treatment (Tourette Syndrome Fact Sheet, 2006). Other causes of the disorder account to 10- 15% of the remaining Tourette syndrome cases. And these are extreme stress, psychological trauma, drug abuse, PANDAS (pediatric autoimmune neuropsychiatric disorder with streptococcal infection), some psychiatric conditions and other medical conditions.


PROGNOSIS:

The prognosis for Tourette syndrome is regarded as generally good. Since most of the cases exhibit mild form of tics, most of them do not even require medical attention. This means that approximately 30% of the people diagnosed with the disorder will have a decline in the severity and frequency of tics, another 30-40% will have a disappearance of the symptoms by late adolescents and the 30-40% remaining cases will experience the moderate to severe form through adulthood (Medical Network, 2006). The condition is not degenerative and will not, in any way, affect the intelligence of the person. The important aspect is that the neurobehavioral disorders existing within the course of the illness may continue and cause impairment in adulthood.




DIAGNOSIS:
Diagnosis of Tourette syndrome is perhaps one of the most challenging aspects of this disorder. A few factors account to this one. First is the disorder itself. The spectrum of its symptoms makes it hard to distinguish the disorder from other disorders with similar symptoms. Another complication is that some symptoms appear to be within normal behavior. The second factor would be the individual. In some cases, diagnosis is hard for some individuals who can literally suppress their tics in public or during the diagnosis with a medical doctor. Third is the environment. Some people may regard that the symptoms are psychotic outbursts therefore disregarding the idea of something more connected with Tourette syndrome. Truly diagnosis is practically one of the hardest parts. It is also said that some individuals may have visited quite a number of doctors before the eventual diagnosis of the disorder. Considering all these complications, experts explored the use of a guide to aid them in the diagnosis of the disorder. Criteria used underwent careful scrutiny and eventually led to the use of the Diagnostic and Statistical Manual of Mental Disorder (DSM-IV). This manual is used for a selection of disorders including Tourette syndrome. It states that both motor and vocal tics should be present at the course of the illness but not necessarily concurrently, the tics should occur nearly everyday for a period of more than one year without remission of tics for more than three consecutive months, the age of onset of symptoms should be less than eighteen years, and the condition must not be due to medication and/ or another medical condition. On the other hand, these criteria are helpful together with observation and interview of the individual and family members.


TREATMENT/ MANAGEMENT:

It is widely reported that Tourette syndrome has no known cure. The key point is to control the symptoms of the individual with it. The treatment primarily focuses on what symptoms are currently present so as to initiate pharmacological therapy or therapy by using medications. Aside from controlling the symptoms, it is consequential to also focus the treatment and/ or management into alleviating the symptoms especially those that are most debilitating to the individual or those that basically impede with daily function. Aside from medications, many researches have documented the use of treatments like behavioral modifications and other alternative strategies such as group counseling or counseling in general which are all helpful in the treatment and/or management of Tourette syndrome. Dr. John Walkup (2007) mentioned that some individuals cannot tolerate the medications’ side effects so they are exploring other alternatives.



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7/14/2007

An Update on the International Scientific Symposium on Tourette Syndrome: Lillehammer, Norway

The Tourette syndrome International Scientific Symposium held last June 21- 23 at Lillehammer, Norway was very successful indeed. There were 16 speakers who presented at the time. The organizers were kind enough to post their presentations online on pdf format. Hence, I would like to share with you these articles. These are very recent articles about Tourette syndrome hence would be very useful for research and education purposes.

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Tourette, 2007. Norwegian Resource Center for ADHD, Tourette Syndrome and Narcolepsy

Philippine Tourette Syndrome Association: Objectives

Philippine Tourette Syndrome Association (PTSA) is the very first Tourette syndrome non- profit organization in the Philippines.

We cater to support TS patients and their families, to educate the Filipinos about Tourette syndrome and to serve as advocate for Filipinos diagnosed with Tourette syndrome.

Join us in our mission to make TS known in the country and make a significant helpful impact in the lives of Filipinos diagnosed with TS.
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The logo was made by Marlon Barnuevo, a TS patient and an industrial design specialist. Actually, the logo was made for Rowena’s advocacy site for TS. Rowena decided to use it as the organization’s logo for Marlon’s credit. The logo emphasizes the carefree TS individual. A person, despite the condition can handle adversities in the best way they can. The kite also symbolizes the TS patient on that perspective.

The Philippine Tourette Syndrome Association: History

The history of Philippine Tourette Syndrome Association can be dated back last February 16, 2007 when a group of doctors from St. Luke’s headed by Dr. Joven R. Cuanang decided to form a support group for Tourette syndrome. The decision was even emphasized when Marlon Barnuevo, a TS advocate and a patient of Dr. Leonardo Fugoso ( head of the Movement Disorder Center of St. Luke’s) and Maria Rowena Victorino, a registered nurse- counselor and a TS advocate, were also invited to join the core- group formation on that day. All of them made a breakthrough to form the first core- group of Tourette syndrome in the Philippines.
From that day on, some of the doctors that were involved specifically Dr. Toom and Dr. Tin (neurology doctors of St. Luke’s) with Marlon and Rowena had subsequent meetings for the core groups' foundation. This led to the first ever lay forum for Tourette syndrome in the Philippines called Twitch and Shout: A Closer Look at Tourette Syndrome.

Months after, Marlon and Rowena formed the Philippine Tourette Syndrome Association. Since it’s the Philippine’s first TS organization, we want to somehow emphasize our country for finally recognizing the impact of Tourette syndrome in the Philippine setting hence putting the name Philippine first.

The group is still fresh and still on the verge of polishing everything up to maximize its purpose and benefit for those we cater to. There is a rich future ahead of us. The group has made a pioneering work and a great decision to uplift the Philippines in terms of progression of organizations that cater to medical clientele. Not only that, we are also making it a point to maximize the services for patients and families with TS by looking at a wholistic approach so that they will be helped in the best way possible.
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Tourette Syndrome has been around for more than three centuries now. Its existence was even questioned during the time when Tourette syndrome was very scarce (shortly after Dr. Tourette's death). But when doctors from New York City, USA back in the 70's documented 485 cases more of Tourette with very detailed descriptions of the people who had it, the breakthrough of interest for the disorder began eversince. And so from then on the USA have developed new studies and researches about Tourette syndrome.
The Philippines started looking after the existence of Tourette syndrome in the Philippines in 2007. Marlon and Rowena started it all. Truly our country has a lot to learn about the medical advancements of Tourette syndrome. But as what the old saying says, "It's never too late." The PTSA definitely looked at the impact of Tourette syndrome in the Philippines and eventually helped the diagnosed and those people involved with it. We have so much future ahead of us, but with your help and everybody's help we can continue building the organization and help educate the public about TS.

A Filipino Doctor's Perspective on Tourette Syndrome

Video taken from the Twitch and Shout Lay Forum: The Philippines' first lay forum on Tourette Syndrome, March 26, 2007

A Filipino Mother's Perspective on Tourette Syndrome

Video taken from the Twitch and Shout Lay Forum: The Philippines' first lay forum on Tourette Syndrome

A Filipino- diagnosed Talks About His Disorder

Video taken from the Twitch and Shout Lay Forum: The Philippines first lay forum on Tourette Syndrome, March 26, 2007

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